Busy week

So I have not posted anything for more than 2 weeks.  It has been a bit of a crazy 2 weeks.

Last week I was packing all week for Riley's very first trip.  We went to NC to visiting family because my Grandmother turned 90.  We had a nice trip and got spend lots of time with family and even got to see some friends too.

We did have several bumps in the trip.  The first was when we first got there.  Our medical equipment company (APRIA) did not send all of the things we needed.  More importantly they did not send both machines we needed.  So at midnight I got to call and yell at someone.  APRIA is a terrible company we have more problems with them than good experiences.  So they came a delivered a piece that could work but not the right machine.  I made it work though.  It was a really good thing that I brought alot of what they were suppose to bring.  They sent us adult trach mask for an 18 month old.  How much sense does that make...NONE.  They sent a humidification container that went with a nasal cannula not a trach, I brought the right one thank goodness.  I was ready to kill someone.  But I worked with what I had and it worked out in the end.

The scariest thing happened on Saturday.  We were at my cousin's pool, which on a side note was the first time Riley got in a pool and she loved it.  We had been in the water for about 20 minutes on so and I was sitting on the steps in the water with Riley in my lap.  She all of sudden went completely stiff in my arms and would not response when I called her name.  Then she snapped at out it and started screaming.  I rushed out of the pool and over to the shade where we were sitting and it took us 15 minutes to get her calmed down.  I thought immediately that she has a seizure.  Once we got her calmed down she was lethargic and slept for about 45 minutes.  She was not her normally self for the rest of the day.  She was crabby and sleepy and just off.  She is normally super happy all the time.  She had another episode later that night at my Grandmother's party.

We ended calling her doctor her in MD, they told us that we didn't need to go to the ER but she needed to be seen when we got back.  They also told us that if she had another seizure, came out of it, and immediately had another one that we needed to go the nearest ER.  She was fine all day Sunday.  On Monday I called and got her an appointment with a neurologist who we went and saw on Wednesday.  We are now scheduled for a EEG on 7/12 and depending on what they find Riley might be put on anti-seizure medication.

She has not had another episode since last Sunday so hopefully it may have been a one time thing.  But only time will tell.